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Written by CeCe Moore, an independent professional genetic genealogist and television consultant.

Tuesday, August 3, 2010

Should You Take An At-Home DNA Test? Knowledge is Power!

This week Mary Carmichael is writing a series of articles in Newsweek in her quest to decide whether or not to take an at-home DNA test. So, I have decided to share my experience with DTC genetic testing with Mary (and you) in hopes of encouraging her to go through with her test. Some of what I write may have relevance to her, while some may not, but I am including it all in case there are more of you out there wavering with the same decision who need a gentle nudge.

There has been a lot of attention on the DTC genetic testing industry as of late, much of it negative. This may discourage some who were considering taking an at-home DNA test. As I have related in earlier blogs, personally, I have experienced a wide range of benefits from my genetic tests and I have witnessed many others receiving benefits as well. These experiences are dismissed by many as "anecdotal," but they are very real to me and the others who have experienced them. "Experts" may disagree with me, but I can only report what I have experienced and witnessed in my many hours of working with DTC genetic testing. So, you've been warned, this is not a scientific study! I am writing from the perspective of a self-educated consumer of DTC genetic testing (and have no financial stake in the industry).

Mendelian Disease Carrier Detection and PreventionI tested with 23andMe for purely genealogical purposes, but discovered some very surprising and important medical information. I am a carrier of Cystic Fibrosis. No one in all of my extended family has ever suffered from this disease as far as I know (and I know a lot about my family's medical history from my extensive genealogical research). When I was pregnant, my doctor never ran nor suggested any genetic tests, so I was not aware of this status even though I already have a child. I also tested my mother through 23andMe and found that, not only did I not inherit this trait from her, but that she is a carrier of a different Mendelian Disease. So I must have inherited the CF carrier status from my dad (who is deceased). This means that there was potential for my siblings and myself to inherit at least two Mendelian Disease carrier statuses. This knowledge could prove to be very important for my five nieces of child-bearing age, my own child and myself (if I plan to have more children). It is highly plausible that through the knowledge of my carrier status (or my mother's), one of my future family members may avoid inheriting a serious genetically predictable disease. This may be the case for you too. You may have the opportunity to inform your family of important health-related information and, potentially, avoid the occurrence of a devastating disease affecting your family, simply through a little knowledge and education. Many young couples do not even consider the possibility of bearing a child with a Mendelian inherited disorder. With education and access to DNA testing, many of those diseases can be avoided or even eradicated. While 23andMe does not test for all variants of the Mendelian inherited traits for which it reports carrier statuses, it does make one acutely aware of their existence. Some may decide to undergo prenatal genetic counseling that they, otherwise, may not have considered. Knowledge is power!

Health Risk FactorsI have also been made aware of some potential genetic health risks through my results at 23andMe. Are they 100% correct? It really doesn't matter in my case because it has inspired me to make more thoughtful lifestyle choices - like eating more fiber. Of course, I had been advised of this before, but, like many of you, I wasn't doing it. Don't our doctors, our parents and the media remind us over and over of the need for healthier lifestyle choices? Of course they do, but, does it really sink in? Judging by the behavior of the majority of us, the answer is NO. However, for many of us, hearing what our genes seem to be telling us does make a difference! There is something intensely personal about having your own body remind you and provide the hints and tips to a healthier lifestyle. For me, getting the results of my 23andMe genetic test, has encouraged me not only to make better choices, but to become better educated about my body and the diseases and illnesses that may afflict it. The potential for self-education is endless, starting with 23andMe's informative resources and extending to all that you can take in from the vast amount of information available on the Internet - like countless health-related academic studies and the mesmerizing concept of personalized medicine (read about Leroy Hood's P4 Medicine). We are truly so fortunate to have all of this at our fingertips! Knowledge is power!

Research BenefitsMany suffering at the hands of a disease feel powerless to it. Customers of 23andMe have expressed to me that it gives them a sense of empowerment by participating in the research at 23andWe. They feel that they are fighting the disease in a large scale manner by contributing to research that may eventually enable scientists to conquer the disease that plagues them. The benefits of these research efforts to society as a whole are obvious. There is still so much to be learned about the links between our genes and disease and, by testing, we can help!Knowledge is power! Citizens of the World - Blurring of Racial LinesOn a lighter note, the Ancestry portion is fascinating! For a person who is interested in genealogy, anthropology, geography, history or racial studies, it is unbelievably entertaining. For those of you who don't care much about those subjects, it will still be of great interest because it is all about you! Learning about yourself, what makes you unique and what connects you to others around the world is a very enlightening experience. Personally, I feel much more connected to my ancestors (and even to their homelands)knowing that I carry their DNA. Further, when you are "introduced" to your living relatives all over the world, you start to feel like a true international citizen and some of the things that separate us all seem a little bit less significant. If some, by learning how truly interconnected we all are, are able to decrease or overcome their prejudices, what a benefit that will be! Knowledge is power!

SummaryBecause of 23andMe, I have evolved from a genetic genealogy hobbyist into a personalized medicine advocate. I truly believe that the more information and, thus, knowledge that we have, the better we will all be. In a society where we desperately need to start taking responsibility for own well being, genetic testing and the education that comes with it, should be encouraged not demonized. My fear is that with misdirected regulation and the recent negative press about this industry, people will be discouraged or, even, obstructed from educating themselves about their genomes. If that happens, the much needed progress in this important field will be halted.

My experience is this: 1. People take more responsibility for their own health with increased knowledge and education. 2. People take pride in contributing to research and increasing general knowledge about the human genome. 3. People feel more connected to the world and people around them with increased knowledge of their personal genome.

Knowledge is power!
Obviously, I sincerely hope you will decide to be tested and, through this experience, gain as much as I have.

6 comments:

You comment that the information blurs racial lines. The information can just as easily confirm racial distinctions and diversity. The realization of just how separate and delightfully distinct we are is also a benefit. You start to feel truly desirous of preserving and maintaining that which distinguishes you from the rest of the world and realize the significance of those things that separate us.

Good point, Pupsenok. I, who knew little about my Finnish heritage prior to DNA testing, now embrace and celebrate my "Finnishness". I enjoy contact with my Finnish cousins on a regular basis and am desirous of learning more about their unique culture and country.I have become acquainted with true 2nd-10th cousins all over the world and treasure all that I have learned about my unique and individual heritage thanks to this hobby.I appreciate your comment.

I guess I'm attracted to DTC genetic testing in part because of my background as a librarian. Librarians consider themselves "intellectual freedom fighters" because they are committed to help their clients find all the relevant information they need to empower themselves to make informed decisions about the challenges they face as they earn a living, exercise their rights as citizens and lead their lives.